Studies analysing the need for health-related information in Germany - a systematic review

The diseases the information needs referred to were very heterogeneous. Only information needs regarding cancer (5 studies) [10, 17, 19, 21, 24] and rheumatic diseases (3 studies) [20, 22, 23] were assessed more than once. Other diseases were: injuries of lower extremities [27], Crohn’s disease and ulcerative colitis [9], multiple sclerosis [12], and stroke [14].

The study design was cross-sectional in 17 [9‐13, 15‐23, 25‐27] and longitudinal in 2 studies [14, 24]. A quantitative approach was chosen in 11 studies [9‐11, 15‐17, 19, 20, 22‐24], while a qualitative analysis was found in 4 studies [13, 14, 18, 26]. Two studies combined a quantitative and a qualitative approach [21, 25]. In one study, an instrument was validated [27]. Information on the study design was missing for one study [12].

Questionnaires were used most often (12 studies) [9‐11, 13, 15, 18, 19, 21‐25]. Interviews were conducted in two studies [14, 26], a specific instrument (the Amsterdam Preoperative Anxiety [27] and Information Scale and Cancer Patients Information Needs [17]) or an information service (e.g. ask-the-doctor service) were used twice [16, 20], respectively. To assess the information needs, questions with rating scales (e.g. ‘Please rate how relevant/important/interesting, etc. the following topics are to you’) were applied in nine studies [10, 11, 15, 21‐25, 27]. Open ended questions with a free text option were found in eight papers (e.g. ‘Are there specific topics to which you like more information?’) [13‐16, 19‐21, 23, 26]. Multiple choice (e.g. ‘What are the three most important topics…?’) [19, 23] and dichotomous questions (e.g. ‘Do you want more information regarding the following topics: (yes/no)’) were used twice [9, 17], respectively. One study did not provide sufficient details of methods or measures [12].

In 15 studies an evaluation of information need topics was conducted [9, 12‐24, 26]. Treatment was the most prominent topic of interest, including questions about the current treatment, treatment options, advantages and disadvantages of each alternative, possible side effects, etc. [12, 15‐17, 19, 20, 22, 23, 25, 26]. However, it was also the most common predefined category (nine studies) [9, 15, 17, 21‐25, 27]. Information on common topics such as etiology [12, 16, 18, 25], diagnosis [15, 16, 20, 23, 26], prevention/health promotion [12, 18, 20, 24] and prognosis [15, 17, 18, 25] was also frequently desired, irrespective of the kind of disease. They were considered as predefined topics in four [12, 15, 22, 23], five [15, 18, 21, 23, 24], four [9, 15, 18, 22] and six [9, 15, 18, 22‐24] studies, respectively. Other, more specific topics such as complementary and alternative medicine (CAM) or nutrition were also of high interest, when considered as a predefined topic. Information on CAM was highly relevant for patients with inflammatory bowel diseases [9], cancer [10], multiple sclerosis [12], endometriosis [15], rheumatic diseases [22] and for parents of children with juvenile idiopathic arthritis (JIA) [25]. Participants of four studies reported an interest in information on nutrition [9, 18, 21, 24]. Information on coping, including psychological support and self-help groups was shown to be of moderate to high interest in three studies [15, 18, 23]. Information on the medical system (e.g. information on statutory health insurance, access to care, local care services) seems to be more important for women and people in need of care as well as their caregivers [9, 11, 18, 19]. Clinical trials were also a topic of interest in some studies [12, 19, 20]. In a survey regarding information about breast cancer and its treatment, 46 % of the participants chose the item ‘Can I be enrolled into a trial’ as one of the three most important items [19]. ‘Validity of studies’ was of particular interest in well informed patients with multiple sclerosis, while patients with lower knowledge scores did not mention the item among the first ten [12]. Neither of the latter studies provided any details about the considered predefined topics. For that reason the topic ‘clinical trials’ is not included in the catalogue of different categories (Table 1). The following topics rehabilitation [9, 22, 23], financial and legal issues [9, 16, 17] and impact on social life [9, 15, 17, 22‐24] were also mentioned as a topic of interest.

Ten studies contained data about the extent of information needs [10, 11, 14, 17, 21‐26]. The need for more detailed medical information was reported frequently. The demand for information was substantial in the whole population as well as in specific patient groups and their relatives. In a survey, 35 % of the 3008 people from the general population reported that they had some kind of information need while almost half (48 %) declared no specific needs [26]. In another survey, Geraedts and Amhof showed that there was a high demand for information on the quality of health care providers in the general population [11]. Additionally, a total of 89 and 86 % of the surveyed sample wanted more information on the quality of medical specialists and hospitals, respectively. Analysing the information needs of young women regarding combined oral contraceptives the mean interest rating of all 25 potential counseling items was 5 on a 7-point-scale. All items had a rating of 4 or higher [25]. Similar results were observed in a study about consumers' information needs for informed choice on colorectal cancer screening, where participants rated all potential topics as relevant [21]. Identifying subgroups of information needs among cancer patients using latent class analysis (LCA) Neumann et al. found that 68.6 % of the patients had some kind of unmet information needs [17]. Vogel et al. explored information needs in breast cancer patients and found them to be time-dependent [24]. In a study on the demand for CAM among cancer patients, almost half (48 %) of the interviewed cancer patients demanded consultation about CAM irrespective of whether they already used CAM or not [10]. Only 24 % were not interested in CAM. In a qualitative survey, family members of stroke patients reported a need for detailed disease-specific information by the medical staff in a personal conversation during inpatient rehabilitation [14].

Among parents of children diagnosed with a disease, parents of children with rheumatic diseases had high interest in further information, although they considered themselves as being well informed [22]. Almost all parents (85 %) of children with JIA considered detailed information on the disease as very important. The mean value for importance was 9.52 on a 10-point-scale [23]. A total of 58 % of the parents had specific information needs for at least one theme. One fifth (22 %) did not indicate a specific theme and only 20 % stated that they did not have any specific information needs.

Associations between information needs and other variables or characteristics were analysed in eleven studies (Table 2) [9‐12, 14, 17, 22, 23, 25‐27]. We found analyses concerning the association between information needs and gender, age, education, duration and course of the disease, knowledge, emotional factors (e.g. anxiety, depression) and the relationship between patient and health professionals.

In two studies, women expressed higher information needs than men [11, 14]. Assessing the need for quality-related information on health care providers, significant gender differences were found in 17 of 41 items [11]. In this study, gender was most strongly associated with the need for information among all considered sociodemographic variables. However, in other studies analysing information needs of cancer patients [17] and patients with inflammatory bowel diseases [9], hardly any gender differences were found.

There is some evidence that age influences type and extent of information needs. Conrad et al. [9], Eustachi et al. [10] and Neumann et al. [17] found higher information needs in younger patients. A trend for higher information needs in younger people was also observed in a survey of the general population [26]. In addition, younger people showed higher interest in disease prevention and health promotion [26]. Information needs of parents of children with JIA differed depending on the age of the child [23].

No conclusive association was found between information needs and education [9, 25], as hardly any significant differences were found between people with different levels of education.

Regarding the duration of disease, a negative correlation between information needs and the duration of an illness was found in two studies [9, 17]. The course of disease had a significant impact on the amount or type of information needs in several assessed studies. Neumann et al. stated that cancer patients in early disease stages had more unmet needs for information on results of medical examinations and treatment options, whereas patients in more progressive stages had more unmet needs for information on social issues and health promotion [17]. Vogel et al. have observed decreasing scores of information needs for all topics except ‘aftercare’ in the course of breast cancer treatment. Only one specific topic showed no significant change (p > 0.05) of interest in the course of treatment ('examination and medical test') [24].

Cancer patients with a poorer health status had higher information needs about CAM [10]. Heesen et al. detected considerable differences in information needs between primary-progressive (PP) and relapsing-remitting (RR) patients with multiple sclerosis. RR patients expressed a higher need for information regarding magnetic resonance imaging, relapses and CAM, while PP patients were more interested in the treatment of gait disturbances, physiotherapy and experimental therapies [12]. Patients with inflammatory bowel diseases had significantly higher information needs with increasing disease activity scores [9].

For the association between knowledge and information needs ambiguous results exist. According to Ullrich et al. parents of children with JIA had lower information needs when they had higher knowledge scores and were more satisfied with the information provision [23]. Likewise, cancer patients who felt informed had significantly lower information needs about CAM [10]. In a small sample of young women, however, the relationship between interest and knowledge ratings about risks and benefits of combined oral contraceptives showed no clear trends [24]. Assessing the information needs in parents of children with a rheumatic disease, the level of prior information (self-rating) and the interest in further information were compared [22]. All topics which were covered by prior information were nonetheless of high interest. No response pattern for topics covered by prior information and low current interest was detected. Patients with multiple sclerosis and knowledge scores in the upper quartile rated the item ‘validity of studies’ among the first three of interest while the remaining patients did not mention this item among the first ten [12].

Anxiety, depression and the requirement for psychological support were correlated with increased needs for information in three studies [9, 17, 27].

Patients had less unmet need for information when they were satisfied with their actual treating physicians [23], trusted their nurses highly, received more caring attention from nurses or were treated empathically by their physicians [17].